My web site is devoted to medical and treatment information about this rare cancer. My blog is devoted to sharing what has been the more difficult part of the journey for me, the emotional and spiritual road I've traveled as a rare cancer survivor.

Monday, May 18, 2009

Survivorship

I'm going to take a bit of a chance here, to say some things that might not be understood or appreciated by some. But I want to be very honest, I want to say some things that from my perspective I don't hear verbalized much by those within and outside of the cancer community. I love what I've heard and truly believe...that if you have a question you are afraid to ask, there most likely are others who are also afraid to ask the question and who are relieved when someone finally verbalizes it. So I am guessing I am not alone in what I think and feel as a cancer survivor. I'm guessing there are other cancer survivors who feel the way I do but who are afraid to verbalize it.

Here goes.

My last post was about the gratitude I feel in having survived for 8 years. The gift it has been for me to be here to complete my job as a parent, to have raised my kids to adulthood. I know I am truly blessed. I know many who have lost their battle with appendix cancer, who have left young children behind. I am truly grateful to be alive still.

Sometimes, though, I feel we as survivors are expected to always stop to "smell the roses", to be thankful for each new day, to live a fuller life, to always have an attitude of gratitude, to always feel blessed. To make more of our lives than those who have not traveled our journey. We are expected to appreciate our lives more than those who have never been diagnosed with a life threatening illness, to be happier, more thankful.

But that expectation is sometimes a burden. Sometimes, I truly envy those who have never had a cancer diagnosis. Who are like I used to be. Who have never had to beg and plead and pray for more time, who have never had to feel the vulnerability we feel with every cancer test, who haven't had to contemplate their mortality at every level on a daily basis, as we have. I envy people who live like we used to, planning and taking for granted a future; old age, retirement, children's weddings and grandchildren. Those of us with a cancer diagnosis have lost the luxury of assuming a future. I miss the days before cancer when I didn't feel so vulnerable. Life was easier when rightly or not, I took my future for granted.

As a nurse prior to my diagnosis I'd seen death and disease and unfairness for many years. I knew on an intellectual level that life was short, that anything could happen, that we would all one day die. I knew we were all terminal. But that intellectual understanding was different than the up close and personal contemplation of my own demise following my cancer diagnosis. Facing death and vulnerability on an emotional level when the threat is real and lasting, as it is after a cancer diagnosis, is different. It's a tough way to live. Everything changes, forever, after cancer.

Many of us post-cancer live one day at a time. And in reality, living one day at a time is a difficult way to live. I never realized how much of our lives involved contemplating the future until I was unable to contemplate my own future. For a long time after my diagnosis I couldn't commit to anything that referenced a future...dentist appointments, vacations, home improvement projects. I couldn't even say the words "next year"; that implicated a future I no longer could envision...I was living one day at a time, living in cancer limbo. Even as long term survivors, the years of ongoing cancer testing reinforce the reality of our limbo.

I guess sometimes I resent that we are expected to live life more fully, to appreciate life more, and to be more grateful for life as a cancer survivors....that as a survivor of a deadly disease we are held to a higher standard of gratitude by many. Sometimes I feel as though we are not entitled to waste time, to be non-productive, to be angry, to be depressed.

I think those who have never had their future and their health threatened should feel ever so much more grateful than we are expected to feel, though. Those who have always been healthy should at least be held to as high a standard.

I was ever so grateful someone had identified and put into words exactly how I felt in the book "Dancing in Limbo: Making Sense of Life after Cancer" (pp. 1):

"There is a cruel myth about surviving cancer. In this myth, when medical treatment is successful, the story ends. Having survived cancer, we pick up our lives where they were interrupted and carry on- with increased gratitude for the simple acts of daily life and clarity of purpose that only a brush with death affords. In this myth, cancer is a blessing in disguise.Though this myth has some truth to it, it is cruel because it is impossible to live. The real story does not end "happily ever after" Instead we live in limbo: after cancer, we know we are on uncertain ground."
.

I have been in the cancer community for 8 years now. I've communicated with hundreds of cancer patients. All of them struggle emotionally. All of them struggle with living with the uncertainty, many struggle with depression. I've talked to some who have even contemplated suicide as survivors, unable to live with the ongoing uncertainty, the ongoing vulnerability with each cancer test.

Fighting cancer is hard. But surviving cancer can be difficult too. Living up to the standard of survivorship is sometimes very, very hard.

4 comments:

analog9 said...

Hi,

I was diagnosed with appendix cancer in October 2008. My appendix burst (perforated) and spilled into my colon, a part of which was removed in December 2008. I'm currently undergoing chemotherapy for colon cancer (oxaliplatin, flurouracil, vitamins and minerals).

I'm a 48 year-old male who also lives with bipolar disorder for which I take several medications. I also have hypothyroidism and high cholesterol (I'm 5'8 220 pounds). I'm an addict of many stripes. I'm 15 years clean-and-sober but only 60 days clean from gambling (slot machines and on-line bidding). I also tend to overeat.

I have read your blog and I think you're being too hard on yourself. I think you have lived a wonderful life. Me? I should be more active. I sleep too much and spend too much time on the computer. I'm single and never been married. I received a music degree in 2002 and am a Navy veteran (honorably discharged in 1985). I live on Veterans disability and Social Security as a result of my service-connected bipolar diagnosis.

Thank you for your blog. I look forward to reading more of it soon.

Sincerely,
Barney Plisko

Karen Ebert said...

Amen Sister! When I first started following your blog, I couldn't catch up with you, because I was still in the early diagnosis phase where fear and shock prevailed. Now I have passed the first anniversary of the end of chemo, and I fully identify with much of what you say - this entry in particular. It is a tremendous burden to try to live every moment with great purpose and no waste. It is exhausting. Also, it is maddening to be caught between the expectation that you will "live every day as if it were your last," and the reality of still having to put money in your pension fund. I've discovered I have created a mask that I wear most days - I go about disguised as a person with a future, even if inside, I doubt there will be a long one. I'm getting to be a pretty good actress. Some days I can even fool myself.
Congratulations on eight years. I am both buoyed by the possibility this can happen, and saddened to realize that even after eight years, the limbo doesn't end.

And Barney? Welcome to a very small club. Carolyn is your best tour guide. Hang in there and I hope your chemo goes well (and quickly).

Karen Ebert

Wendy S. Harpham, MD said...

Hi,
I'm an 18-yr survivor (in and out of rx) and can assure you that you are not alone in these thoughts and feelings.

I don't identify with people who call their cancer "a gift" or say they live each day as if it might be their last. As you say, it is exhausing to live that way. And to do so is to lose the joys that come with planning, anticipating, hoping and delayed gratification. To do so is to lose the simple joys of an ordinary ho-hum day.

I've worked hard to integrate my illness and heightened sense of vulnerability in ways that help me to calm down the unpleasant fears and feelings, and to enjoy what life I have. I didn't and wouldn't choose cancer, but I didn't have a choice.

For me, a cancer diagnosis encourages me to know both the fragility and the hopes of life, and with this knowledge to live most fully.

Here is a poem about remission, stating how I miss the innocence of pre-cancer and how I hate the tests, scares and all. I do conclude with all I do appreciate, because gratitude lifts my spirit. http://tinyurl.com/p9fe4l

with hope, Wendy

Dana said...

I too have appendix cancer (2 three months stints of chemo 2 surgeries)and have just had my 3 month post chemo ct and checkup. Everybody keeps telling me "you are doing so good because of your attitude" What attitude "survival" I don't treat the future any different now than I did befor. Why worry about the future if your not there your not going to know it. Your original story was printed out and given to me by friends while I was still in the hospital and just told by the doctor "you have cancer and have a 97% probability that you won't live a year.They said look she made it you can too. So thanks for the hope and all the information.